Late Bus

Shortly after Zachary died I began to have irrational fears of Lilly dying in some freakish way. During the seven months at CHOP before Shawn’s eventual cancer diagnosis, I spent a lot of time searching for human horror stories. They aren’t hard to find. I read stories of kids drowning in washing machines and school bus accidents. I was drawn to the chaos and disorientation in the descriptions of the experiences. I wanted to know about the small things that can lead to big chaos like a child wanting to please his mother by remembering to put his dirty socks in the laundry and ending up dead because of it. I wanted to learn about his mother’s description of the actions and events and emotions that immediately followed reaching into the washing machine and finding his arm.

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Photo Credit – Amelia Chaplin-Loebell

Friday’s nor’easter kicked up quickly in our area in an unpredictable and disorienting way. Schools were open. Then schools were closed but the kids couldn’t get out. The buses couldn’t get the kids home and parents couldn’t get to the schools to pick them up. I’ve seen storms like this before but only a few times.  As far as I know, everyone eventually got home. Tired and hungry and needing to pee, but alive and able to sleep and eat and use the toilet when they got there. We all suffered but we all made it out.

I dragged my feet leaving work after it had been announced that the college was closing early due to the storm. I stared out the window at the snow and ate the cottage cheese and blueberries that I had brought for lunch while most of my coworkers were packing up and wishing each other a safe drive home.  I looked at my phone’s weather app and wondered why the snow on my phone was falling slowly downward while outside the window it was falling forcefully sideways. I called Bill and told him what I knew about what was happening. I tried to call the school to tell them that I want to pick Shawn up on the way home but the lines were down.

I stared out the window some more.

I thought about Lilly who was about to get on the bus.

I thought about the dead kid in the washing machine.

I walked to my car and the wind blew me sideways.

My eyeglasses were covered with ice.

I wanted to be home.

I wanted my kids to be home.

I sat in my car for a couple minutes and screamed and cried and banged my hands on the steering wheel like I’ve done in the CHOP parking garage so many times.

I brushed the sideways snow off my windshield and headed for home.

I changed routes several times for an hour and forty five minutes.

I got home.

I stared out the window at the now upward snow.

I waited.

I thought about the dead kid in the washing machine.

I looked out the window.

The storm door opened and then the front door. Lilly came in, soaked and snow covered.

I breathed and said “I’m happy you’re home.”

 

The Pile of Stuff

It’s been months since I sorted through my pile of stuff that includes various things that may or may not be important that I put in one spot so it doesn’t get lost. It used to be a weekly task on Sundays and the pile was always current within a week. I’ve been adding to it since late fall and I don’t think I’ve removed anything since early spring. I knew there were some time-sensitive things in it so I put it on my Must Do list for today. It’s been on the Must Do list for weeks, probably months, but it actually happened today. Here’s what I found:

  • My first warning of illegal absence from Lilly’s school. 
  • An unopened letter from the CHOP division of neurology dated in April telling me that Dr. Panzer was on medical leave and the opened one from May telling me that she was now dead. The first one had letterhead with the old CHOP logo, the second one had the new logo. Sometimes things change quickly. 
  • A letter from DuPont Hospital for Children with the details of the siblings of kids with cancer three year research study that Lilly agreed to participate in only because they’ll give her $20 each year for answering their questions about her feelings and experiences about Shawn’s cancer. 
  • The $20 gift card from the DuPont study.
  • My about-to-expire car registration renewal. 
  • The about-to-expire renewal to continue to store Shawn’s frozen testicular tissue to maybe give him a shot at having biological kids when he’s an adult, if he wants to, since the chemo we gave him will most likely make him infertile. 
  • An unopened letter from the kids’ school telling me that it’s illegal to copy the material from the upcoming state standardized tests. 
  • The approval for Lilly to miss school for Shawn’s Make-A-Wish trip with an asterisked note that it will be an unexcused absence since she has missed more than ten days, including back when Shawn was still on treatment and we used to take her down CHOP with us because she is his favorite person and needed to be there.  
  • Notices of approval for four MRIs from Shawn’s secondary insurance via Medicaid. 
  • The flight information for Shawn’s Make-A-Wish trip, that was later changed. 
  • Christmas cards. 
  • Three Audiology reports from CHOP documenting Shawn’s progressive hearing loss. 
  • Ten weeks of Shawn’s old homework, completed and marked by his teacher.
  • Sympathy cards for Bill’s son’s death that still need thank yous to be written. 
  • A Bed Bath & Beyond 20% Off coupon. 
  • Highlights magazines. 
  • Ann Taylor Loft coupons for my birthday in December. 
  • Shawn’s second marking period report card. 
  • Copies of the kids’ birth certificates. 
  • Panda’s adoption and vaccination paperwork. 
  • Waffles’ adoption and vaccination paperwork. 
  • Deposited checks and cards that still need us to write thank you letters for donations when Shawn was in treatment and I wasn’t working. 
  • Sympathy cards from my father’s death. 
  • Coupons from Toni Roni’s pizza. 
  • A 1095-B form documenting that Shawn has state Medicaid coverage for our 2016 taxes.
  • Forms to be completed for Shawn’s 504 plan and IEP for the next school year.

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The Pile used to be a lot less daunting and a lot more manageable. Our lives used to feel a lot less daunting and more manageable. My Pile Of Stuff doesn’t seem to disagree.

The Sound

The Sound a parent makes at the moment their child dies.

About two months into our CHOP adventures, I layed awake in my chair/bed thing next to Shawn in the PICU, trying to sleep since Shawn was already doing so, bored, reading Facebook or something equally mindless, repetitively clicking like to various vaguely interesting things that were happening where I wasn’t.

Code Blue.

A kid was in immediate danger. Not breathing or something similar. The first time I watched a Code Blue in action it was terrifying. Everyone moves fast. Their faces go from routine to serious REALLY QUICKLY. After maybe the tenth time it became part of the deal of living on the Pediatric Intensive Care Unit of a children’s hospital. The PICU is transient. You don’t know anyone and after a while, for purposes of self preservation, you learn not to turn your head to look at much of anything on your way back to your room. Or rather, your kid’s room. Where you are trying to sleep.

The kid rarely died in my experiences of Code Blue. They had a medical team that was among the best in the world. I quickly learned to just turn up the music on my headphones if I didn’t want to listen to it, or focus on whatever I was doing with Shawn. It would be ok. The kid would be ok when they finished doing their work. Except when the kid wasn’t ok. Except when the kid died.

That night I heard an indescribable sound that I will never forget. The sound that the mother in the room next to us made at the moment that her child died.  I took my earbuds out and sat on the side of my chair/bed thing and listened. It wasn’t a cry, it was more guttural than that. The crying would come later.

Bill’s phone rang at 4:28AM. We grumbled to each other, in a half asleep fog, about the amount of annoying spam calls his phone has been getting lately. When it immediately rang a second time after the first rings were done, I told him that he should answer it. His phone was in the living room, a few dozen feet away from our bedroom. When it rang a third time on his way to the coffee table I braced myself.

I wasn’t prepared.

The Sound.

No.

Bill collapsed.

I picked up his phone.

What?

Who am I talking to?

What are you saying?

Kris’s friend.

Zachary.

Died.

Kris died?

No.

Zachary died.

What?

I already knew.

From my sample size of two, I can say that the sound that a parent makes at the moment that their child dies, or at the moment they learn that their child died, is universal. I was 42 years old before I heard that sound for the first time and 44 years old when I heard it for the second time. Perhaps in less sanitized societies you hear this sound earlier in life and you know what to do with it. I’m still learning. And I know that I cannot begin to pretend that I understand the experiences of all who’ve lost a child and what sound they make at that moment.

I have a better than not chance of outliving Shawn. So I have a vested interest in this. Maybe this is research. Experience. We’ve spent the last year and a half mentally bracing ourselves for the potential death of the wrong kid. I don’t know why that kid on the PICU died. I don’t know if he or she had fought a long battle with chronic illness or if he or she was in a car accident the day before. Or a drug overdose. Or cancer. Or HLH. Or asthma. Or suicide. Or anorexia. Or heart disease. Or child abuse. The PICU is transient. We purposely don’t know. It doesn’t matter. The Sound is the same.

“To Include More Life In Our Home”

“Why do you want to adopt a pet?”

This was a question halfway down the adoption application form at a local animal shelter, somewhere in between “Do you have any other pets in your house?” and “Do you have a regular veterinarian?”

The past year has brought a lot of death. Favorite musicians from my childhood and adolescence. My father. Several kids we’ve met along our way.

When your child is very sick with an unexplainable illness that eventually turns out to be brain cancer, you spend a lot of time thinking about the worst. You don’t even have to try to imagine the worst because the worst surrounds you. And sometimes death isn’t even the worst.

Once last spring, either just prior to or just after Shawn’s diagnosis, I spent a Saturday afternoon Googling pages that parents had written describing the moment their child died. They aren’t hard to find.

Shawn’s love of animals is no secret. When we decided to make a public Facebook page for him, he was excited to give it an animal theme name. When he finished treatment, we began to think that perhaps he should have a dog, his favorite animal. The rest of us are not really dog people, although we do know how to take care of dogs. A dog is a big responsibility. We suspected that Shawn would be ready, but are we all?

imageWe started with fish. An aquarium for Bill’s birthday in November. The kids and I wanted to give it to him, fully stocked, as a gift but we soon realized that we didn’t know nearly enough about aquariums to make it a surprise. Bill did, though, so we told him the plan and we all went together to get the supplies and the fish. Picking out your own birthday gift isn’t such a bad thing when it means that you are encouraged to get exactly what you want, even if it isn’t necessarily the most practical decision. He chose two Angel Fish and a Plecostomus, to keep the tank balanced. The kids named them Zebrah (pronounced like Deborah), Goldie, and Cheetah. Everything was great for a couple of days. Then they began to slow down, float more than swim, and soon enough Zebrah and Goldie were dead, too. We went to an aquarium hobbyist store, figuring that our mistake might have been getting the fish from a mass market pet store. We talked to an expert there. Our aquarium was good, he said, we were doing all the right things. We brought home Grape and Warrior. They looked even better than the previous fish, graceful and strong. They, too, were dead within two weeks.

The plan had been fish, then a cat, then a dog. In that order and after each got established in our home. A clear and clean progression. But the fish were dying. Despite all our efforts and doing everything right, the fish continued to die. The aquarium plants were doing great, but the fish kept dying. Death wouldn’t let us be.

imageAt my father’s local memorial service a montage of the music that had been in rotation on his car stereo when he died played quietly in the background, including the Peter, Paul, and Mary version of Bob Dylan’s Blowin’ In The Wind.  Shawn picked up on the line “how many deaths will it take till he knows that too many people have died?” and told me that he is going to be one of the last people in the world to have cancer. Later he told me that he wonders what new diseases there will be when he’s twenty years old. Shawn thinks about some pretty big things for an eight year old kid.

What to do about the cat? The fish died. Can we get a cat when the fish died? How stupid of an idea is it to get another cat anyway? Our 12 year old cat, Kitty, that Bill brought with him from Chicago hates other cats. kittyShe finally seemed happy here as the only animal. Our last cat got out and never came back on the day that we moved into this house. Shawn and I weren’t even here. We were inpatient at CHOP. We suspect that he became disoriented and couldn’t find his way back to our new house. The cat before him died from cancer when he was 6 years old. At the time, we were in the middle of getting our house in Philadelphia ready to sell. We didn’t even notice that he was sick until he curled up next to me one night and he was skin and bones. He was dead two weeks later.

We went to the ACCT animal shelter inside our local PetSmart about five times in the last few weeks. Sometimes we visited while getting the fish,  other times just to say hi to the animals. I found an instant affinity with a four year old cat named Waffles. She had recently been in foster care and was renamed Peggy but the shelter rep kept the name Waffles along side Peggy on the card outside her crate. She was usually asleep when we visited. I asked more and more questions about this cat. She had given birth to kittens in August and was brought to the shelter with them soon after. All her kittens had been quickly adopted. Kittens are cute and they usually go fast. Waffles remained behind. A parent’s job is to raise their kids to become independent adults and Waffles seems to have done just fine at this life task. She seemed perfectly content. My desire to get Waffles grew stronger every day.

Bill wanted to give me Waffles as a surprise for my birthday next week. Like the aquarium, this quickly became an logistical impossibility.

Lilly was resistant, worried about what had happened to our last two cats.

Cancer and disorientation had taken them from us. It’s no surprise that she worries about this. Cancer and disorientation have taken over our lives in the last 15 months. Skittle was one of those “special cats.” We spent a lot of money trying to keep Skittle alive. It didn’t work. And what would Kitty do with a new cat around? She had finally grown back all her fur after spending years overgrooming from anxiety. What if the new cat was aggressive after all?

The kids and I had developed a joke about getting Waffles and we ate a fair amount of Eggos in the last couple weeks. Eventually we were all ready to get Waffles. Well, maybe not Kitty. We couldn’t really ask her in any meaninful way.

We adopted Waffles in the dark pouring rain on a Tuesday night. We brought her home and let her out into our house, ignoring all the recommendations to introduce her gradually. Kitty growled at her. The kids played with and petted her. She ate the leftover cat food on the kitchen floor. Bedtime came and we all found our place.

The next morning I read the details of Waffles’ history on the paperwork that the rep had given to me. She was brought to the shelter in North Philly on August 18th, shortly after giving birth with hair loss on her face and neck from an old wound. Shawn also had no hair on August 18th and he and I were elbow deep in shit and vomit, four days into the next round of chemotherapy. Bill and I were surprised to discover her traumatic history, given how affectionate she is just three months later. She and Kitty have already developed an unspoken agreement to share us and the house. In fact, Kitty has also become more affectionate with everyone. Waffles is likely a special cat.

“Why do you want to adopt a pet?”

Without much thought, I wrote “To include more life in our home.”

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Run Every Day

In 2013 I ran 357 out of 365 days. That means that I ran every day except eight of them. I remember most of the days that I didn’t run that year. Three of them for a minor injury. A couple of them due to apathy after a failed race attempt. But most of those days were great. That doesn’t mean that I loved every run. I ran over 4,000 miles that year. Some of them must have been unpleasant.

“Run Every Day” was a mantra that pulled me through last year during Shawn’s longest admission when I was disoriented and overwhelmed. I even made it one week. Seven days in a row.

Run Every Day.

Shawn’s September chemotherapy admission lasted 15 days, just like every other chemo admission. As his physical side effects became progressively more intense during each one, my running diminished each time to the point where I ran only once during his last admission. By then I no longer recognized my running or myself.

Run Every Day.

Right now I run at the back of my group with the recently injured, very pregnant, and surgically treated.

I used to run 10+ miles every day.

Run Every Day With No Minimum Distance.

Shawn was discharged from CHOP for hopefully the last time on September 26th. I decided soon after that I would Run Every Day In October with no minimum distance.

I ran hungover more than once. I ran tired many times. I ran bored a lot. I ran in weather that I would have preferred to not run in. I ran with friends. I ran by myself. Sometimes the only thing that got me out of bed or off the couch was my decision to Run Every Day In October. Most runs ended better than they began. Kinda like most of the 357 days in 2013. By the end of the month running began to feel familiar again in a good way. I ran 129 miles in October, an average of 4 miles per day.

October turned into November. I’m still running.

My Most Used Words

I was scrolling through Facebook recently and came across one of those silly word cloud generators that a friend had done and allowed to be posted on her page. I noticed that my friend’s “most used words” made sense for what I know about her, but were also all positive words. Surely at some point in whatever time period was being scanned she must have posted some negative words and maybe a curse word or two. But there were none in the cute little cloud.

“Click here to discover your most used words on Facebook!” it prompted. Sometimes I get curious and so despite my hesitation about privacy, malware, and spam, I allowed this site to scan my recent posts, pictures, and comments and create a word cloud of my most used words. The words most used would be biggest and probably closest to the center.

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There it is, front and center using the biggest letters – Shawn. Shawn is the center of everything.

My eyes scanned quickly for Lilly. Surely Lilly would be there. Lilly has to be there. I found Lilly. Not in the smallest letters, but close, and on the outside of the cloud.

Lilly the person (vs. Lilly the word) also feels small and on the outside lately. She feels neglected because she IS neglected. She eats, she has a comfortable bedroom to sleep in, she gets to school on time every day. But she does not get the amount of attention she should get from her family right now while Shawn is big and in the middle. We know this. We acknowledge this. We all resent this.

Other words are also notably small and on the periphery. Running. Food.

CHOP is bigger than cancer.

Bill isn’t on there at all.

Who knows what algorithm is used by this program to pick the words and display them in this arrangement. But I can’t say that it got them wrong.

The toll this all takes on the family is huge.

Well, See Ya

In the final week of what will hopefully be Shawn’s final chemotherapy treatment, a strange thing happened. I began to make connections like crazy. I’d written previously about the isolation I’ve felt at CHOP and my struggles to make connections in the early days of our oncology floor admissions following the isolation I felt during the undiagnosed months at CHOP with no disease affiliation when I felt no hope of making connections and began writing this blog in an effort to find some.

I can’t say that I did a single thing differently during our final scheduled chemo admission than I didn’t do for any of our previous oncology admissions. I was probably less angry. That might be a key difference. But that’s been a gradual process. I was probably only slightly less angry than I was a month ago and only slightly less angry than the month before that. I’m not sure that my anger level accounts for the uptake in connections that I’ve made recently.

Nearing the end of this segment is not the end. Not by a long shot. Don’t ever think that a family nearing the end of a child’s active cancer treatment is anywhere even close to the end. That will only add to their sense of anxiety and isolation.

I’ve made connections with at least a half a dozen families during this stay, at various stages of this process. Some have been at this for years. Some came here last Tuesday crying, “I knew something was really wrong, I just knew it!” in the room next to us on their very first admission. Some were on round two, seven years after round one.

That’s at least five times more connections than I’ve made during the previous admissions.

 

Shawn was also more open. He went to every play group, music and art therapy groups, and casual gatherings he could find. Even when those efforts were physically painful for him, he wanted to be there. It was such a contrast from months ago when he refused to do anything or a year ago when I got annoyed by the offers for him to come to a group. At that time, he was screaming in pain and they couldn’t even explain it let alone fix it, what good was a music therapy group going to do him?

The anger was still there. I again yelled and cried in the hallway. I cried on the bathroom floor. I cried myself to sleep more often than I didn’t.

Lilly has made some friends here this time, too. Other siblings. This stuff is indescribably hard for the siblings. We got to know a family that we met during our last admission. They were discharged on Saturday. We tried to get Lilly down here to say goodbye before they left. The girls had becomeimg_5834 fast friends, first meeting in a “sibology” group, and later having wheelchair races in the hallway. That kid came to our doorway several times on their last day to ask if Lilly was here yet. Finally I found out what time Lilly would be here. I went to their room to tell them. It was being cleaned. The bed was already crisply made for the next kid. All the kid artwork was off the walls. They were gone.

 

 

There’s a transient nature to this life. How dangerous is it to makes friends here?

For the first time in over a year, I have no guaranteed expectation of returning here. There’s a level of anxiety that comes along with that reality. Life here became our New Normal. Now we need to find another one.

And then it was our turn to be gone.

As our final admission came to an end, discharge number twenty, I kept thinking of the end of the last episode of Seinfeld when the four main characters get off the train and Elaine is left standing, waving, and says “Well, see ya.”